Hi everyone, I was diagnosed 12th jun and have recently saw ms nurse regarding all the dmds, very hard to decide which is best so any advice greatly appreciated. But to be honest I’m just so fed up I’m a roller coaster of emotions, have a young family, hubby and gr8 parents but everyone really struggling with dx and I just don’t know what to do? I’m so upset for the amount of pressure this is putting on everyone around me esp with this heat I’m completely exhausted!! I can see everyone trying to help me but I hate the fact they have to do alot more as I’m not able at mo and can only see things getting worse I hate asking for help and hate what ms is doing to me, I know I need to lower my expectations etc but I just feel I’m falling apart and my nearest and dearest are too! Any advice would be greatly appreciated!!
Have a good curse, accept that this is the new you and manage life to suit you. Everyone else will have to conform if they want you to have a life and sometimes you have to lay it on the line. Your family love and need you but you have to have some control to keep you positive. Ice packs around your middle will help with heat problems and enable you to do more. Have the DMDs but expect side effects but know that they are the right thing to do. Making an effort for youself is helping everyone else. This is the place to have a good moan as it keeps it away from the family. Get some rehydration tabs and keep sipping water as a healthy bladder is of major importance for MSers. I expect you to start feeling more positive.
Thank u for your post, I know I must but just seems no light at end of tunnel at present, will try ice packs, regarding the bladder it’s doesn’t like to work on the best of days awaiting on apt for that too
Hey kel. Sorry you’re feeling so rubbish. I’m in the same situation (diagnosed end of may) and I’m also struggling with letting people help me. I’m a single mum to two teenage boys and battling with myself over needing them to do more to help out and not wanting to draw attention to the fact that I need help. I realise now that I’ve been living for the times when they’re not here so I can give in to the pain and exhaustion without having to put a brave face on. It’s rubbish isn’t it? I’ve always been so strong and capable that its killing me to admit that I’m not at the minute. So I’ve no got any useful advice yet but if I come up with anything I’ll let you know!! Take care and try not to be too hard on yourself xx
Hi kel, I know hun, it`s the pits living with a chronic, progressive disability.
But the thing is love, this is the hand we were dealt. We can
t hand it back, mores the pity.
So we have to adapt our lives to accommodate this monster.
This means asking and accepting help when it is offered.
Yes, we do sometimes feel we are a nuisance, a drag, whatever. But just think about this…if it was your OH or parent who had the problem, wouldnt you still love and help them?
I`m sure you would.
We`re all here just the once, so try to use your precious energy in finding ways to make life a bit easier and a lot safer, yeh?
Keep coming here when you need to say things you`d rather not say to close family or friends.
We`re here for you.
Hi Kel, just read your posting, I so understand your fear and frustration and it is difficult to come to terms with the illness and how it affects what you are able to do but it sounds like your you have a loving family around you, you can’t change the fact that you have MS but how I dealt with it is to count my blessings - I was originally diagnosed with a tumour on my spinal cord and had surgery to try to remove it, however, there was no tumour it was in fact MS but the MRI scans showed what looked like a tumour on my spinal cord, so I went from thinking that it might be cancerous and I could die or I could have been left paralysed from the operation but it was neither of these and I was so relieved it made me grateful because some people do have tumours and face a more grim future,
It did take time for me to accept different things that were thrown at me such as feeling useless when I had a relapse, no longer able to work, not being the one in the family anymore who everyone would come to for advice and help but gradually I adjusted and now enjoy a more relaxed lifestyle which allows me to appreciate every day things which before MS and being busy all the time working and bringing up the family and all that goes with that I was too busy to even notice.
Life will get better it’s not the end of the world but a discovery of the things in the world that you hadn’t noticed before.
Keep your spirits up and learn to count your blessings is my advice. Take Care xx
Hi Kel, Poll is right, it is hard to accept help when you once used to do things yourself, it’s not an easy thing to come to terms with, but you will and so will your family. I figure that if you’re strong enough to get this monster as Poll puts it then you’re strong enough to over come what the little b@gger hands out. Your family will learn that when you need help you will ask for it. I suggest that you sit down and have a good old heart to heart about it and let everyone know how you feel and how they feel. As that saying goes, it’s good to talk. But we are always here to listen if you need to have a moan or groan or just a chat. Sending (((((HUGS)))) Janet x
Can I just say a big thank u to all who replied I’m feeling a bit better today and ms nurse sent out alot if literature so I have read now and family are also going to read. I know I must lower my expectations of what needs done etc and ask for help when needed - so glad to have this forum as at least others can understand exactly what it’s like!! Thank u all again Kellie x
So glad we could help hun.
I definitely agree, I remember when I was diagnosed and the neurologist had the scan photo up on the computer screen. He told me it was ms and I nearly passed out, I felt awful and so devastated but I remember after a few days had passed, my dad told me that when he saw the scan he thought it was a tumour (what his dad passed away as a result of) and I just realised, wow it could have been worse. I know it sucks so much and I still get days when I feel, ‘why me?’ Days when I just want to cry at the idea of this horrible situation I’m in. But I just try to live for today. Have fun, don’t let it bother me now because. We don’t know what will happen tomorrow, not just with the ms but with life in general. I hope you feel better, it’s nice to have people who understand. All my love.